Executive Summary

Meningitis Now is a UK charity which focusses on supporting those affected by meningitis. A collaboration between Meningitis Now and Picker has explored the experiences and posttreatment care of adults aged 16 and over following a stay in hospital for meningitis in the last 5 years. A survey of UK adults ran from 15th September 2022 to 28th February 2023 (24 weeks) and received a total of 228 responses.

The survey focused on hospital discharge, recovery, and information provision and support during aftercare. Regardless of the cause of meningitis, analysis of the findings has highlighted gaps in follow-up care and support for adults with a recent experience of meningitis. Meningitis often results in people suffering from ongoing and multifaceted aftereffects, which impact many aspects of their lives. It is evident that many respondents do not feel they received enough information, nor were they directed to appropriate support services, despite reporting that they would have liked both.

The survey identified room for improvement in the following areas:

Improving awareness: Greater information provision at discharge for people who have suffered from meningitis and their family, friends and employers, would help to reduce the negative impact of meningitis on people’s social and financial wellbeing.

High quality information for staff: To support high quality aftercare, interventions such as discharge checklists and training resources (e.g. videos, leaflets) should be readily accessible for healthcare staff, in particular for GPs, to manage patient expectations and signpost to relevant information and support.

National guidelines: Meningitis Now should use the findings from this report to inform the national standardised guidelines for bacterial meningitis and meningococcal disease that are currently under development, and to advise on aftercare and support protocols for other causes of meningitis.

Regional differences: Further research is required to explore the regional differences in experiences of information and support provision for people who have suffered from meningitis in the UK

Holistic support: People who have suffered from meningitis should have access to holistic care and support to address potentially complex and multifaceted needs

Accessible care: Accessing care should be straightforward, and referrals should be timely and sympathetic. Healthcare staff should be proactive in ensuring the needs of the individual are explored.

Tailored support packages: Aftercare support packages should include both psychological and recovery support services, as appropriate to the individual. This should include directing people who have suffered from meningitis to charities at the point of discharge.

Further research: it is evident that more research is needed to explore aftercare information and support provision for people who have suffered from meningitis. Potential areas for further exploration include assessing the content and coverage of information and support; education and training gaps within health and social care professionals; and reasons for disparities in support and aftercare by different groups such as gender, age, region and cause of meningitis.

Background

Meningitis Now is an independent charity dedicated to building ‘a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives’.

Picker is a leading international health and social care research charity who carry out research and evaluations to understand and improve individuals’ needs and their experiences of care.

Meningitis Now collaborated with Picker to understand the support needs and care experiences of UK adults (aged 16 and over) leaving hospital after a recent experience of meningitis (viral, bacterial or another cause). The project aimed to explore experiences of the hospital discharge process and information provision, along with longer-term information and support needs of adults with a recent experience of meningitis.

This work aligns with the meningitis strategy of the World Health Organization (WHO)1 , where one of their five pillars focusses on improving aftercare and support for patients.

This report summarises the findings from a survey of adults with a recent experience of meningitis carried out by Picker, on behalf of Meningitis Now. It presents the results from the 32-question survey, and data from all UK respondents, unless otherwise stated. Findings from the survey are supplemented with frequency tables and sub-group comparisons (provided as separate documents)

1 WHO. (2021). Defeating meningitis by 2030: a global road map. Defeating meningitis by 2030: a global road map (who.int) accessed April 2023

Methodology

The aim of the study was to develop a questionnaire to help explore the experiences and support needs of the UK adult population with a recent experience of meningitis. The first qualitative stage informed the content of the questionnaire, followed by the development and implementation of a quantitative survey.

Qualitative Stage – Survey Development

The survey content was informed by qualitative research involving twenty participants: Five individual depth interviews, conducted remotely via Microsoft Teams.

An online asynchronous focus group with fifteen participants, held on Facebook.

Recruitment

To facilitate recruitment into the qualitative research, Meningitis Now and Picker posted recruitment materials on their social media channels, which included Facebook, LinkedIn, and Twitter. A £25 gift voucher was offered to all participants in return for their participation. A screening questionnaire was used to assess the eligibility of those interested in taking part. People were eligible if they: Were aged 16 or older

Had a UK hospital stay for bacterial or viral meningitis within the last five years, and Lived in the UK.

Participants were screened out if they did not meet all these criteria. The screening questionnaire also asked for people’s age group, ethnic background and gender to ensure we invited a diverse group of people with a recent experience of meningitis to contribute. It also asked for their preferred participation method (focus group or interview).

Selected participants were sent a consent form and an information sheet to provide further information and what to expect should they take part. If they agreed to participate, they were asked to provide informed consent by completing the consent form and a researcher contacted them to arrange next steps. Participants were reminded that they could withdraw at any time and did not have to answer any questions that they were not comfortable with. As well as being detailed in the consent form, this information was reiterated at the beginning of the focus group and of each interview.

Focus group

The focus group lasted for 14 days. Two questions, as determined by a topic guide, were posted per week, with three days in between each posting. This scheduling was chosen to allow participants to fit participation in around their other commitments. Three of the four questions posted in the group were discussion-based; after the researcher posted the question in the group, participants were encouraged to reply to it by commenting on it, and to reply to other participants’ comments.

It was communicated to participants prior to the focus group that these questions should take an average of 20 minutes each to answer.

The final question was a poll, with response options based on participants’ answers to the previous three discussion questions.

As the group was held on Facebook – an essentially public forum used by nearly two billion people worldwide – several measures were employed to protect participants’ privacy:

- Using Facebook’s terminology, the group was made ‘private’ and ‘hidden’. The meant that the group’s content could not be seen by anyone outside of the group, and the group could not be searched for by non-group members.

- Participants were only added as group members once they had either privatised their existing profiles or created a new Facebook account with no identifying information on it.

- Each question and its responses were deleted after 3 days, to reduce the risk of data ‘leaking’ outside of the group.

- Clear and thorough communication to participants around the expectations associated with their engagement in the research process, including the requirement that their involvement in the study was contingent upon refraining from sharing any information discussed in the group outside of the group.

- Ensuring data was stored securely and sufficiently anonymised to comply with ethical guidelines, Picker’s standard working practices, and UK GDPR regulations.

Interviews

Each of the five semi-structured interviews was scheduled for an hour. A topic guide was prepared in advance and was referred to by the researcher throughout each interview to guide the conversation but was not distributed to participants. After consent was sought, participants were reminded that they were not required to answer any questions that they were not comfortable with, and that they were free to end the interview at any time without explanation.

Analysis

The findings from the qualitative stage were analysed for themes relating to the meningitis information, care, and support experiences of the participants. Insights from this stage informed the structure and content of the questionnaire and were particularly useful in ensuring that response options were relevant to survey respondents.

Quantitative Stage – Questionnaire

The findings from the qualitative stage were used in conjunction with Picker’s survey development experience, Meningitis Now’s understanding of the needs of those who have suffered from meningitis, and the Picker Principles of Person Centred Care2 to form a 32question survey:

4 screening questions

15 closed, single choice questions

7 closed, select all that apply questions

2 open-ended free text questions

3 demographic questions

1 further question asked respondents which month and year they had been admitted to hospital, to allow for a consideration of how data may have been influenced by the COVID-19 pandemic (March 2020 being the beginning of the first lockdown).

The questions asked in the survey aimed to provide a clear, holistic picture of the demand for and provision of meningitis care and support for adults in the UK, following their hospital stay.

The survey was hosted and made available to participants online via the survey platform Qualtrics and ran from 15th September 2022 to 28th February 2023 (24 weeks) No questions forced a response beyond the screening questions, and routing was used to ensure that respondents only saw questions that were relevant to them.

Eligibility

Respondents were eligible to complete the survey if they had been treated in a UK hospital for meningitis within the last five years, were over the age of 16, and lived in the UK. Screening questions were added at the beginning of the survey to ensure that respondents who did not meet the eligibility criteria were screened out. Respondents who had been admitted to hospital between two and five years ago were not asked about their experiences of being discharged from hospital, to ensure that issues with recall would not affect the reliability of the data. Instead, these respondents were asked only the questions regarding their more recent experiences of information and support within the last 5 years (at the point of responding to the survey, which was in field from 15th September 2022 to 28th February 2023, see above), as well as the freetext and demographic questions. All respondents were asked whether their responses could be used if they closed the questionnaire before finishing the survey. Two respondents who did not finish the survey declined this request, and so have not been included in this report.

Advertising

The survey was publicised on social media by both Picker and Meningitis Now, and targeted advertising was also used on Google, Twitter, LinkedIn and Facebook to maximise responses. Meningitis Now and Picker each posted blogs on their websites which explained the purpose of the survey, details about eligibility to participate and provided a hyperlink to take part. Meningitis Now’s existing mailing list and newsletter were utilised for further survey publicity.

For further details about survey publicity activity, please see Appendix 1

Ethics

The project underwent internal review, and it was concluded that ethical approval was not required for this project in line with the Health Research Authority guidelines. The project does not involve primary research with human participants and raises no material ethical issues.

Analysis of survey data

Data were downloaded from Qualtrics and cleaned, including steps to remove any participants who were ineligible to take part, or had not agreed for their data to be used if they had not fully completed the survey (see ‘Eligibility’ section above for details). Frequency tables for each survey question were generated, showing counts and percentages for each response option. Crosstabulations were also produced. Suppression rules were applied to the frequency tables and crosstabulations: a suppression threshold of 11 was used so where the number of responses (overall or by subgroup) were less than 11, data are not shown. This was both at an overall level and at a subgroup level.

The freetext comments were downloaded and responses to Q28 (What is the one thing you would change about meningitis aftercare and support in the UK?) were analysed. A researcher read the freetext comments and familiarised themselves with the data, before coding comments into themes.

About the respondents

Another cause of meningitis

Unsure of the cause

*Questions about gender and ethnicity have lower numbers of respondents. This is because they were asked at the end of the survey, by which point some respondents had closed the survey or simply chose not to answer.

Region n=228

Northern Ireland

West Midlands (England)

East of England

London

North East (England)

Wales

East Midlands (England)

South West (England)

Scotland

North West (England)

Ethnicity n=206*

English / Welsh / Scottish / Northern Irish / British Irish

Any other White background

Any other Asian background

Any other Mixed / multiple ethnic background

African

White and Black Caribbean

White and Black African

White and Asian

Pakistani

Any other ethnic group

90% 2% 2% 1% 1% 1% <1% <1% <1% <1% <1%